Family Stories - Daniyal

Family Stories of Myotubular Trust

Family Stories of Myotubular Trust

 

 

"Daniyal was born on 7.12.2007 early morning, after 30 hours in labour he was born blue and floppy. It took 30 minutes to resuscitate him and eventually there was a pulse and breathing, those 30 minutes were the longest minutes in my life.

At this stage I did not know what was wrong with my boy all the feedback I was getting is that he is breathing and stable and taking care in ICU. Three weeks later I got more bad news, Daniyal had fractured his thigh bone, I was devastated! I knew something was wrong as Daniyal was communicating with his eyes, and those eyes meant he was in great pain.

The hospital had no feedback on how this happened. After a number of blood tests which all came back normal, the doctors decided to go for a muscle biopsy, and after several weeks they found something and that was myotubular myopathy. I decided to go for the tracheostomy as this with put him on long term ventilation which is supplied by the nippy. Such an excellent machine which is mobile and can be able to carry anywhere.
Daniyal loves attention and thrives on love, the nurses at the TCU Alder Hey have done fantastic work alongside his current specialist, I applaud in what they do for my boy.

Daniyal is a bright and very intelligent young boy, and fills my heart with delight, I am a very proud father. Me and his mother parted company when Daniyal was just 6 weeks old, she had very little contact with my son ever since. I have always been there for Daniyal and always will.

May Allah (SWT) bring him home and live the rest of his life. Ameen"

Shakeel Mann